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The $1000 Genome: Ethical and Legal Issues in Whole Genome
Sequencing of Individuals

By John A. Robertson
The American Journal of Bioethics :: Volume 3 Number 2

Prof John A. Robertson

Abstract
Progress in gene sequencing could make rapid whole genome sequencing of individuals
affordable to millions of persons and useful for many purposes in a future
era of genomic medicine. Using the idea of $1000 genome as a focus, this article
reviews the main technical, ethical, and legal issues that must be resolved
to make mass genotyping of individuals cost-effective and ethically acceptable.
It presents the case for individual ownership of a person's genome and its
information, and shows the implications of that position for rights to informed
consent and privacy over sequencing, testing, and disclosing genomic information
about identifiable individuals. Legal recognition of a person's right to control
his or her genome and the information that it contains is essential for further
progress in applying genomic discoveries to human lives.

John A. Robertson has
written and lectured widely on law and bioethical issues. He is the author
of two books in bioethics and numerous articles on reproductive rights, genetics,
organ transplantation, and human experimentation. He has served on or been
a consultant to many national bioethics advisory bodies, and is currently
Chair of the Ethics Committee of the American Society for Reproductive Medicine.